Intense pain. Debilitating weakness. What was driving a young man to the brink of death?

Andy · Nov 30, 2017

I'm sure many of us can relate to many parts of this story.

He was just 30, but Colin McEwen’s life had become a living nightmare. Debilitating spells of excruciating abdominal pain had begun landing him in the hospital a few times a month. Then came the weakness, the insomnia, the seizures, and the anxiety.

The pain, McEwen said, was “unholy, like someone is squeezing your intestines. It would take your breath away.”

Yet more devastating than the pain was the mystery. Doctors could offer no explanation for it — and physicians and loved ones began to wonder if McEwen’s symptoms were real at all. It would take eight years before McEwen finally got an answer.

Mysterious symptoms gain momentum
Twenty years earlier, McEwen had been in a high-speed car accident that left him with chronic, but manageable, lower back pain. Seemingly randomly, in 2008, the pain intensified; then the belly symptoms began.

The unspeakable pain in McEwen’s abdomen waxed and waned. Sometimes he’d have only a few days between attacks; sometimes, respite lasted a month or more.

Blood tests and imaging scans were normal. Doctors near his home in Oklahoma attributed the pain to scar tissue — known as adhesions, or mesenteric fibrosis — pulling on nearby organs.

Yet pain was just one facet of the attacks. McEwen would also become dreadfully constipated and overcome by anxiety and nausea. He rapidly lost 20 pounds, his 6-foot frame down to a skeletal 120. He started having seizures. And he struggled with insomnia, sometimes showering 10 times a night to calm down enough to drift off to sleep.
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https://www.statnews.com/2017/11/27/medical-mystery-pain-weakness/

Valentijn · Dec 1, 2017

A bit ironic that the Mayo Clinic found the obscure diagnosis, when they've systematically botched ME/CFS so badly

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Intense pain. Debilitating weakness. What was driving a young man to the brink of death?

Andy Committee Member (& Outreach when energy allows)

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Intense pain. Debilitating weakness. What was driving a young man to the brink of death?

Andy Committee Member (& Outreach when energy allows)

Valentijn Guest

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